PwME appeals for help
“They’re trying to commit me to a mental health ward with very severe ME… I need help.” This how a brief and urgent email appeal to #MEAction began last Friday. The email was from Thane Fredrickson (also known as Thane Black on social media), a person with very severe ME who is currently a patient at HCMC hospital in Minnesota.
Thane initially posted in a twitter thread about his situation:
“A week ago I voluntarily admitted myself to the hospital to get help [because] I am losing weight as a result of increased food intolerances, secondary to my very severe #MECFS. A psychiatrist here decided that [I’m] mentally ill…”
Thane had gone to the hospital on January 16 seeking nutritional support. He has both ME/CFS and MCAS diagnoses, and has been having increasing trouble maintaining his weight and nutrition, despite eating as much as he can tolerate. The medical staff ran basic diagnostic tests, but not the tests often needed by these patients. When they found no abnormalities, the staff decided that Thane was potentially a harm to himself and put him on a 72-hour hold, while they evaluated him for potential commitment.
ME community rallies but hospital refuses to listen
#MEAction and ME advocates from across the country, including Drs. Ron Davis, Janet Dafoe and Ami Mac, David Tuller, the Minnesota ME/CFS Alliance, and many others, rallied around Thane to provide support, advocacy and public attention to his situation.
Outreach was done to alert hospital medical staff to the various problems that ME/CFS and MCAS patients can have with their digestive systems, in the hopes that the hospital would agree to release Thane at the end of the hold. Despite these efforts, the hospital has decided to proceed with having Thane involuntarily committed to psychiatric care, and filed a Petition for Commitment on January 26, 2021.
Thane has been assigned a court-appointed attorney and there will be a preliminary hearing before the Judge. His lawyer is in touch with various experts on ME/CFS, including Drs. Davis, Dafoe, and Mac. #MEAction and advocates from across the ME community will continue to fight for Thane’s right to appropriate medical care for ME. We will share information as it becomes available.
How to support Thane
#MEAction is working in close communication with Thane and will let you know of ways we need the community to mobilize for him. Right now you can donate to this fundraiser organized to support his medical and legal expenses.
“One of the strongest people I know”
“Thane has shown nothing but strength, resiliency and immense appreciation for all the support that he has been getting,” said Lisa Alioto, Minnesota ME/CFS Alliance Vice President. “He has noted many times how, ‘it helps a lot knowing there are people out there who care about me and are trying to help me.’”
Another Minnesota ME/CFS Alliance volunteer, Suzzane Wheeler, observed in her recent visit to the hospital to see Thane:
“Thane was quiet and resting in the dark, with a mask on his face. He asked the nurse to bring him lunch when we were done with our visit. He told me that he was so appreciative at the outpouring of help throughout this crisis.
I had corresponded with Thane in the past and knew that he loved to fly and was working toward his private pilot’s license prior to his illness. He became ill just prior to taking his final flight evaluation. When I entered the room he recognised me (under my mask) and greeted me saying, ‘You are a helicopter pilot.’ I replied, ‘I was an Army pilot prior to getting ill with ME/CFS.’ We talked about flying and I told him I was so happy he had the experience of flying.
Thane seemed hopeful in spite of the stress of his current situation and lack of freedom. We also talked about horses as he had seen my recent photos about horses on social media. I told him that when he gets a little better, I’d be happy to take him out to visit my horse–which is the most calm and gentle horse you’ll ever meet.
It was obvious to me how much Thane truly wants to get better. It’s difficult to comprehend all that he is up against right now. But while Thane is physically very weak, mentally he is one of the strongest people I know.”
Misdiagnosing Severe ME
Mistakenly diagnosing the debilitating symptoms of very severe ME as a psychiatric illness or “functional disorder” is inappropriate and harms people with ME. The U.S. Centers for Disease Control and Prevention (CDC) clearly states that “ME/CFS is a biological illness, not a psychologic disorder.”
People with ME and their loved ones know how difficult it can be to try to explain to people what the experience of living with, caring for, or treating very severe ME is actually like. There is an excellent video series on severe ME from Dialogues for a neglected illness project that gives voice to the unique needs of patients with very severe ME and addresses issues of symptom management and hospital admission.
Although there needs to be far more research investment into treating very severe ME, important principles for its recognition and care are detailed in recent publications like the 2017 ME/CFS Pediatric Primer (the section on severe ME is broadly applicable for both adults and children). Table 5 also highlights the key differences between depression/anxiety disorders and ME symptoms.